Stress percepito nei caregiver di pazienti con RASopatie : implicazioni cliniche, strategie di adattamento terapeutico e ruolo del supporto psicologico nei contesti assistenziali ad alta complessità

punti percentile (p 0.05) nello stress percepito. I dati raccolti confermano che il supporto psicologico ai caregiver rappresenta un elemento chiave negli interventi centrati sulla famiglia, soprattutto in presenza di quadri clinici complessi e ricoveri prolungati, contribuendo a ridurre il carico emotivo e a migliorare la qualità della vita sia dei pazienti che dei loro familiari. [Testo dell'editore]

The perceived stress of caregivers of patients with RASopathies represents a significant clinical challenge, particularly in complex settings such as hospitals, where the emotional and caregiving burden is intensified. The aim of this study was to assess parental stress levels in families of children with cardio-facio-cutaneous (CFC) syndrome and Costello syndrome (CS). The sample included 39 children (22 CFC, 17 CS) and 53 parents, who completed the Italian version of the Parenting Stress Index-Short Form. The results show that caregivers in the CFC group reported significantly higher levels of total stress and higher scores on the "Parental Distress", "Parent-Child Dysfunctional Interaction", and "Difficult Child" subscales compared with the CS group. A larger proportion of CFC parents had clinically relevant scores (≥85th percentile). Multivariate analysis, weighted for parental role, confirmed that belonging to the CFC group was associated with an average increase of approximately 18-25 percentile

points (p 0.05) in perceived stress. The findings support the view that psychological support for caregivers is a key component of family-centered interventions, particularly in the presence of complex clinical conditions and prolonged hospitalizations, helping to reduce the emotional burden and improve the quality of life of both patients and their families. [Publisher's text]